It takes a few days to get the IL2 and antibody meds out if his system and hopefully then no more fevers. He feels pretty crummy, stiff and sore. The first few days at home are tough. Poor little dude.
Friday, September 12, 2014
Friday
Jack's home! He's retaining a bit of fluids, weighing in at 47lbs, his cheeks are pretty chubby and cute. This afternoon he spiked a good fever of 105. Tylonal won't get rid of the fevers, so we add some Ibprofgin to the med list.
Thursday, September 11, 2014
Cookies in Room 603
Today I went and bought five dozen cookies from Eileen's Cookies to share with all Jacks's nurses, doctors and staff. Today (and I'm sure tonight), our room has been buzzing with smiling faces and lots of early birthday wishes. Today has been wonderful, such a sweet boy!
Jack wrote a note to the doctors and nurses down in the clinic to come up for a cookie. His note reminds me of the book I read to him when he was younger-May I Please Have A Cookie.
Everything is looking good so far to be discharged on Friday. Can't wait, two weeks here, Jack and I are ready for home sweet home.
Wednesday, September 10, 2014
Wednesday
Just a quick update. Jack is hanging in there through treatment. He's spiking some good fevers, 104.2 and is starting to retain some fluid. He looks kinda cute with chubby cheeks.
So far his Creatinine levels are staying within the normal range. (a test how the kidneys are handling treatment.) He's doing a little snacking, but not really any serious eating. Thank goodness for the NG tube.
Other than that, fingers crossed smooth sailing the rest of the week and the kidneys stay happy and working properly.
We have PT and Miss Peggy (school teacher) comes in every morning to work with Jack. Today he was falling asleep while he was doing school work. We had an early morning, NG tube clogged so little dude was up at 7am getting another one put down. I've lost count on how many times this has happened.
Pic: Jack putting together some silly sentences during school time. This was pretty fun! http://magneticpoetry.com
Today I'm grateful for:
- Jenn coming up to see Jack from Make-A-Wish. It's so nice to have some one to chat with for a bit.
- Kidneys still doing their job.
- Love all the nurses and staff here!
- Love all the nurses and staff here!
Monday, September 8, 2014
Back up at the Hospital for Week 2
Well, that was the shortest 1.5 days at home ever! I didn't unpack any of our gear, just washed some laundry and everything is ready to go tomorrow morning. The weather was spectacular this weekend. It was great to have the house opened up and fresh air circulating around. Cats loved looking out the window, they are such big hunters trying to catch a fly or growling at a bird on the patio.
Saturday was pretty laid back. Jack and I were both tired and grateful for being at home, on our couch and no one bugging us. :)
On Sunday, Jack was a super star and was munching on food here and there. He and I went for a short walk this afternoon, almost a block down and then back up. In the early evening, we headed up to Campbell to kick the soccer ball around. Bugs were bad, so we didn't spend too much time up there.
So the plan is, 7:00am check in tomorrow (Monday). This will be our last week of back to back treatment. Hooray! He'll be getting both the IL2 and Antibody meds, it's gonna be kinda of a tough week, but he'll power through. Last time he got both meds, our stay was eight days, had some kidney problems, came home 10lbs heavier with fluid and couldn't walk. Now that was a doozy to say the least. I'm saying a little prayer tonight that this isn't the case this week.... because, it's his birthday on the 14th (Sunday) and we need to be home to celebrate this little dude turning 8 years old!
I'm grateful for:
- Jack out and about walking a bit without too much bribing.
- I'm a huge fan of this cooler weather.
- little dude eating a little this weekend. Hey, every calorie counts!!
Sunday, September 7, 2014
Saturday
As of now, that darn NG tube has come up five times while we've been here, upset tummy or it's been clogged. No idea what's going on, but fingers crossed that darn thing better stay down this weekend. It's getting to where it's not that big of a deal for Jack to have it put back down. He says he would rather have a NG tube put down then a dressing change. Not sure on that one!
Friday we played a little poker after the school teacher left. Yep, Jack knows how to play. Look at that poker face he's sporting!
Also, the Godfather from Godfathers Pizza came to visit. It was National Cheese Pizza Day on Friday, and he brought all the doctors and nurses pizza at Children's.
Today I'm thankful for:
- a pretty low key stay here this week, well except for the NG tube.
- Jack got some serious Minecraft hours in this week.
- PT has really helped him get stronger and Jack is starting to walk better each day.
- we popped in and saw our cousin Abe. Glad his little surgery went well and hopefully he can scoot on out tomorrow morning.
- a successful year of treatment. It's been a year now since Jack was diagnosed. He's been a super star through all of this. Hang in there little dude, we're getting close to being done!
- a pretty low key stay here this week, well except for the NG tube.
- Jack got some serious Minecraft hours in this week.
- PT has really helped him get stronger and Jack is starting to walk better each day.
- we popped in and saw our cousin Abe. Glad his little surgery went well and hopefully he can scoot on out tomorrow morning.
- a successful year of treatment. It's been a year now since Jack was diagnosed. He's been a super star through all of this. Hang in there little dude, we're getting close to being done!
Thursday, September 4, 2014
Checking In
Nothing to exciting to report, which is a good thing. No fevers, bumps or rashes. Jack's weighed in at 39lbs. He doesn't eat the greatest, (kinda snacks) when he's here, so the doctor bumped up his calories to 2.0 calories/mL. He will be getting around 1500 calories a day plus what ever he snacks on.
Jack's doing physical therapy every day, so that's nice to get out of the room and get some good exercise and stretching in.
Today is pet therapy day, so Jack got to pet the dogs which is one of his favorite things to look forward to on Thursdays.
Other than that, we're just hanging out until Saturday afternoon and we should be released.
Tuesday, September 2, 2014
Long Holiday Weekend

Jack was admitted to the hospital this morning. The first week is just the IL2 treatment, and the second week is both IL2 and antibody. Yep, it's a two week back to back treatment. Since we are going in on Tuesday, we won't be released until Saturday, and then back again in Monday.
September is National Pediatric Cancer Awareness Month. Next time you're out and about in the evening, take a drive by the state capital. It's glowing all month. Jack and I went to the capital lighting, it was pretty cool. To all the little fighters out there, Keep Calm and Fight On!
Today I'm thankful for: - Jack feeling better and wanting to go outside and play. Yippie! - Chase is growing quite nicely into his teenage years. I was even told today what a nice mom I was. Score! - thinking about Jack's little cousin Abe. Jack and I will get to see the little guy up at Children's Hospital on Friday.
September is National Pediatric Cancer Awareness Month. Next time you're out and about in the evening, take a drive by the state capital. It's glowing all month. Jack and I went to the capital lighting, it was pretty cool. To all the little fighters out there, Keep Calm and Fight On!
Today I'm thankful for: - Jack feeling better and wanting to go outside and play. Yippie! - Chase is growing quite nicely into his teenage years. I was even told today what a nice mom I was. Score! - thinking about Jack's little cousin Abe. Jack and I will get to see the little guy up at Children's Hospital on Friday.
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